Privacy Notice (Plain-English) For Website & Service Users

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Inflammatory Neuropathies UK – Privacy Notice Last updated: 12th August 2025​

 

 Who we are 

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We’re Inflammatory Neuropathies UK, the only UK charity dedicated to supporting people impacted by Guillain-Barré Syndrome (GBS), CIDP, MMN, and other Inflammatory Neuropathies. We provide information, support, grants, local groups, online forums, fund research, and advocate and campaign on behalf of the Inflammatory Neuropathies community.​

 

 Your privacy matters to us 

 

We promise to respect your personal information, keep it safe, and not share it with anyone unless it’s necessary and lawful.​

 

 The personal information we collect 

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Depending on how you interact with us, we may collect:

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• Your contact details (name, address, phone, email)

• Information about your condition or experience (only if you choose to share this)

• Records of your donations or fundraising

• Messages you send to us

• Details you post in our forums or groups

• Information for grant applications

• Your communication preferences

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Some of this may be sensitive health information, which we only collect with your clear consent.

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 How we use your information 

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We use your information to:

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• Provide support services

• Run local groups and online forums

• Send updates you’ve asked for

• Administer grants and donations (including Gift Aid)

• Carry out research (with your permission)

• Improve our services

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 Our legal reasons for using your data 

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We only process your data if:

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• You have given us permission

• We need to provide a service you’ve asked for

• We have a legal duty (e.g., Gift Aid records)

• It’s in our legitimate interest as a charity, and your rights aren’t harmed

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 Keeping your data safe 

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We keep your data secure using encryption, passwords, and restricted access. We train our volunteers and staff to handle your information carefully.

 

 How long we keep it 

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We only keep your data for as long as needed for the purpose it was collected and to meet legal requirements. For example, Gift Aid records are kept for 6 years.

 

 Your rights 

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You have the right to:

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• See the information we hold about you

• Ask us to correct it

• Ask us to delete it

• Change your contact preferences

• Withdraw consent (if we’re processing based on consent)

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Email us at hello@inflammatoryneuropathies.uk if you want to make a request.

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 If you have a concern 

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You can contact our Data Protection Officer at rich@inflammatoryneuropathies.uk or 01529 469910. You can also complain to the Information Commissioner’s Office (ICO) at www.ico.org.uk.